Hadley And Halee Wahlen

In regards to what has actually happened the past few days, I’m sure that it has been confusing to everyone. This timeline may help and it will help me to be able to focus on my work (and is another coping mechanism for me) if I just get this out (feel free to delete if you don’t want to be bored with the excessive details found below) and no one likes seeing a grown man weep like a little school girl so I prefer to explain this in email form (and not have to relive it over and over). With that said, I am doing great, so don’t be afraid (or feel awkward) to be around me (or to ask any additional questions) because we are ready for this battle that is front of us!: · My wife called me at work on Monday and said that our pediatrician had called and wanted to discuss our screening results, I had an Ogden C&I marketing meeting and asked her if she could try and get it rescheduled. They told her that the only reason the Dr was in that day was to discuss the results with us so we figured it was pretty serious and we went in Monday afternoon. She told us that the CF gene was detected in the girls which meant that there was a 50% that they had it. Obviously we were shocked and devastated (I was mainly devastated because I had no idea what it was and it is such a scary name). · They set us up with Primary Childrens (PC) to do a “sweat test” on Tuesday to determine whether or not my wife and I were both carriers of CF which would make them have CF. The tests took a few hours, we also talked to a genetic counselor, she gave us more optimistic numbers, 80% that they did not have CF, we were told that the results would be in that night. After 6 excruciating hours, the Dr finally called us back and gave us the news that we didn’t want to hear. Needless to say, we didn’t sleep much that night (still not knowing everything about CF). · Wednesday, we went to PC at 1:00 pm to meet with the Pulmonologist and the associated CF foundation team. We were there until about 5:30 with the girls, they were weighed and tested and everything came back great. The day was more about educated and helping us. We met with the CF nurse, Pulmonologist, social worker, dietician, research and genetic counselors. We received a ton of valuable information and were exhausted by the end of the day. Lisa has a medical background and understood most of what was said. It was like I was put into medical school with my last taste of medical study 15 years ago in a high school biology class, so I was lost for a while. But I asked some questions and was able to educate myself somewhat on the subject. · Our next appointment is Sept 10 and appointments are quarterly thereafter (as long as everything goes well). · Other notes: · Thankfully the girls are fine and healthy (other than some associated digestive issues) and have not been hospitalized. o The Dr emphasized that we are trying to stay ahead of the game and by doing all of these things before hand, namely, keeping them healthy will help preserve their lungs and will be an investment for their future. o Their condition is not rapid or onset, it is a progressive disease. o CF does not affect their intellect or physical appearance what so ever, so they will look like normal (and I’m sure extremely beautiful, I look forward to being an over protective father once they start dating J. o They won’t have to do lung treatments until they are older. (around 4 years old I think). o My sister had a friend growing up that had CF (and my sister didn’t even know about it). She hasn’t seen her in years and now they both live in the same city, the CF girl is now 34 and has 3 beautiful kids, with a fourth on the way and is living life to the fullest. · We have a “parent to parent mentor-PC program“ that called me this morning. She wants to talk with us, she has 12 year old twins with CF(diagnosed well after birth), a third child with CF and 4th that this CF free. She will be a great resource and says that they are doing great. We have also been assigned the mom who had a newborn diagnosed at birth. · The Dr gave us a few things to help them out right now: o enzymes (which help them better absorb the nutrients and helps them digest their food better). o Salt (they lose a lot of salt due to their condition, still learning about this one). § These are given to the twins at every feeding. o Vitamins (drop variety). § 1 ML per day o We are making the formula more caloric (less water and an additional scoop of powder). BTW, the drs are impressed with their weight gains, but this will help accelerate it since they were preemies. · Surely there will be a lot of trying times ahead of us and the road will be long and difficult, but the CF director’s slogan for parents is that there is no need to change their dreams or adjust your expectations for them. You will be amazed at what they are able to accomplish. · We are excited to help provide them with the best life possible and enjoy it with them! · THANKS AGAIN FOR YOUR SUPPORT,PRAYERS AND CONCERN IN OUR BEHALF